Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a severely debilitating multisystemic disease with no currently approved treatment or cure.
Approximately 25% of ME/CFS patients are severely or very severely affected, requiring extensive home care and support, while having little access to the Austrian healthcare system. 'Adult patients with severe and very severe ME/CFS in Austria. A multi-perspective study' aims to address this care and research gap, in particular for people with severe and very severe ME/CFS.
This study is funded by the WWTF (Vienna Science and Technology Fund) and the WE&ME Foundation as part of the WWTF Call ME/CFS 2024 - Understanding ME/CFS and conducted at the Medical University of Vienna, Department of Primary Care Medicine in cooperation with the ÖG ME/CFS (Austrian Society for ME/CFS).
The situation of people with severe or very severe ME/CFS in Austria is almost completely unknown. There are no contact points or facilities specializing in ME/CFS in this country that those affected with varying degrees of severity can turn to. The basic healthcare needs of those patients who are housebound or bedbound are unmet because there is a lack of outreach structures. This structural undersupply means that particularly people with severe and very severe ME/CFS are largely invisible in the healthcare system. This circumstance creates an urgent need for action and research for those affected with severe and very severe ME/CFS in Austria. There is a need for the creation of specialized interdisciplinary care concepts and structures.
Project team:
Core team at Department of Primary Care Medicine: Verena Hackl, BSc MSc, Univ.-Prof. Dr. Kathryn Hoffmann, MPH, Dr. Silvia Wojczewski, Mag. Sandra Leiss, MA (Liaison person at ÖG ME/CFS), Malin Schwake, B.Sc.
Extended team: Department of Primary Care Medicine: Univ.-Prof. Dr. Sabine Pleschberger, MPH, Anna Christina Maukner, BA, MSc.; ÖG ME/CFS: Astrid Hainzl, MSc
Aims of the study:
The results of this study will provide information about:
(1) The situation and disease development of severely and very severely affected ME/CFS patients in Austria and their experiences in the healthcare system
(2) The care and treatment needs of patients and the support needs of (family) caregivers with a focus on the early detection of symptom exacerbation
(3) Derived from the study results, recommendations for action and a guide for future research projects
In addition, the development of customized telemonitoring and high-quality home care strategies should be informed by the results.
Methods
Using a qualitative, multi-perspective research approach, the experiences and needs of severely and very severely affected ME/CFS patients and their caregivers will be investigated by means of narrative and semi-structured interviews. Focus groups are planned with health-care professionals such as doctors and nurses as well as with professionals in the field of nutritional therapy, occupational therapy, physiotherapy and psychology. Study participants are largely recruited via patient organizations, professional networks and social media. This study has been approved by the ethics committee of the Medical University of Vienna (1614/2024) - the personal data of the study participants is subject to data protection and will subsequently be anonymized. The data will be analyzed using qualitative content analysis.
What are the participation criteria and how does study participation look like?
If you are interested in participating in the study or if you have any questions regarding the study, please contact Verena Hackl, BSc MSc at verena.hackl@meduniwien.ac.at.
Once contact has been made or feedback has been received, appointments for the interview or the respective focus group will be coordinated by a member of staff at the Department of Primary Care Medicine at the Medical University of Vienna. The consent form and further information will be provided as part of this process.
For ME/CFS patients participating in the study, there is of course the possibility of receiving the interview questions and an audio device so that they can carry out an “auto-interview”, with breaks and over a longer period of time, taking into account their own health resources and individual stress limits. In that sense a crash should be avoided as best as possible.
The focus groups and interviews with the research assistants will take place online via WebEx or the interviews can also be conducted by telephone or on site (in the Vienna area, e.g. in a room at the Center for Public Health - but also in home visits where necessary). The focus groups last approx. 90 minutes, the interviews approx. 60 minutes. When answering the questions, there is no right or wrong, all experiences described are equally valuable. When the results are available, a webinar is planned for the study participants in which the results will be presented and the participants will have the opportunity to give feedback before the data is further processed scientifically. This webinar will last approximately 60 minutes, participation is voluntary (at least one person from the ÖG ME/CFS will be present in any case).
Participation criteria:
For persons with ME/CFS:
- Person diagnosed with ME/CFS in severe (housebound) or very severe (bedridden) form
- At least 18 years old
- Resident in Austria
- Good knowledge of German or English to be able to understand the questionnaire or conduct the interviews
For family caregivers:
- Caring for a person (at least 18 years old) with diagnosed ME/CFS in severe (housebound) or very severe (bedridden) form
- Resident in Austria
- Good knowledge of German or English to be able to understand the questionnaire or conduct the interviews
For healthcare professionals:
- Professional care of patients (at least 18 years old) with diagnosed ME/CFS in severe (housebound) or very severe (bedridden) form
- Resident in Austria
- Good knowledge of German or English in order to understand the questions asked or to be able to conduct the interviews.